Last summer I had a medical emergency. The odds were it would kill me but I survived with few life threatening consequences. The problems I had are commonly fatal for 80 year old men. There is a message in my experience which I hope to share with you in this article. It is a bit longer than most but stay with me. Understanding consequences is critical to survival and as patients we ignore them at our peril.
Much of the last decade for me has been tainted by the fact that I have cirrhosis due to NASH. People who have been with the foundation for some time know the story but for any newcomers a short review.
Like so many, the first time I ever heard of NASH was when the hepatologist said "You have NASH cirrhosis and I'm sorry, we have no treatment". This was after years of trying to get a diagnosis for unsettling things that I was experiencing. This was in 2015. When I then learned that the standard of care for asymptomatic liver disease was to ignore it until it became serious I became so angry at my doctors that I felt I had to do something. I started the Fatty Liver Foundation in 2017 to give me a platform from which I could object to the way patients were treated.
My cirrhosis journey has been different from that which many experience. I was able, through diet and exercise, to go from a stage 4 to a stage 2 based on liver stiffness measures by Fibroscan. Until late spring of last year I felt pretty good but things began to change about May. It was little things, increasing fatigue, more difficulty remembering things, not feeling like my balance was quite right, occasional gastric upsets. The kinds of things we all think of as the normal course of becoming older. I was 80 after all so not unexpected and easily ignored.
Over several months things got worse and in June I started having severe muscle cramps in my back. Like so many the covid lockdown ruined my previous efforts to get exercise and I hadn't really kept myself up. That was an easy thing to blame it on and I had a few sessions with a physical therapist. Didn't help much, then in July I fell. I didn't think I really hurt myself although my back pain was considerably greater. Just strained I said. It will improve with a little time. My back didn't really agree with me and got worse. I finally went to my PCP at the insistence of my wife. He drew some bloods and we talked about exercise for my back.
That same day he called us and said "Go immediately to the ER, they are expecting you. You are having a critical calcium event which is very dangerous".
We got to the ER and sure enough, they immediately hustled me into their critical care room and started a battery of tests. In a short time I was admitted to the hospital and a flurry of people and tests took place of which I am only vaguely able to remember. The crisis was because my calcium was off the charts. Several times high normal. Calcium is a critical electrolyte but high levels are very damaging to hearts and kidneys in particular.
For a couple of days they were drawing blood every few hours. Both of my arms were covered in big ugly black bruises from the elbow to the wrist. My platelets had dropped so low that all of the needle sticks leaked. I didn't understand at the time but they were running troponin tests. They were waiting for my heart attack to begin. Troponin is a chemical that is released when heart muscle starts to die.
I was in quite a serious condition. When men my age have that kind of crisis, if they don't die shortly, they are on a toboggan ride to hell which will bring death in a matter of a few months as systems slowly shut down.
In the middle of all that drama my other tests came in and the diagnosis was that I had a pretty aggressive form of multiple myeloma. The oncologist was so concerned that she came with her nurse to my bedside during her lunch hour to get my consent for treatment and immediately shot me up with a bucket load of cancer drugs. The myeloma had been the cause of my decline and the elevation of my calcium and it was doing its best to kill me.
Among the things I learned from all the testing was that when I had fallen I didn't just strain my back. I had a series of compression fractures. I damaged my thoracic spine quite badly with fractures in T1, T3, T6, T8, and T11. At this point I'm only concerned about T6 and T8 as they had the most damage but as my blood chemistry got back to normal and they wanted me to reduce the pain meds my back became the central focus of most of my waking hours.
When it became clear that I wasn't about to die, it was time to move to rehab. Several weeks of that and I finally got to go home where we got me a hospital bed and I played the part of mostly helpless bag of bones for a number of weeks. But, as most of you know our mantra is get your exercise. Do something. If you can only do one repetition, do one. Then tomorrow do two, but don't let your disease chain you to your couch.
I started PT with a hospital based trainer that only worked with cancer patients and we began my recovery. In the beginning my back was so unhappy that it really limited me. One of the exercises that I valued is the leg press. You push a plate to lift weights using just your legs. The best I could do was 75 pounds. A healthy 6th grader could probably beat that but it was a beginning.
My goal was to be able to run again. Before covid I had regularly jogged on a running path near our home. I'm sure that everyone was pleased that I had a goal but no one was taking bets that I could do that.
We are now a couple of months into my recovery and just this week I jogged for 1/10 of a mile for the first time in nearly a year. It wasn't pretty and I imagine the sight of a grey old guy pretending to be a runner wouldn't inspire confidence but it was that first wobbly step to a better future. My training weight on the leg press is now 300 pounds which works and we don't want to go higher to avoid risking injury to my back. It still limits me somewhat but is steadily improving as the muscles slowly adjust to the new geometry of my spine.
So why would I relate all of this to you. I believe that I have survived this because through much of my life I remained active even though my profession kept me far too long in front of a computer. I played racquetball 3 times a week for thirty years. I walked and jogged from time to time through most of my 60's and 70's. I didn't have the expected heart attack in the hospital because I had maintained a decent cardiac health throughout my life. I didn't entirely lose my physical strength in my advancing years so I had a foundation to build back on after the crash.
My message for you is that it is never to late to start. Any level of exercise that tells your body it is time to do something is a benefit. Treating exercise as something that must be a part of your life will extend your life and make it feel better regardless of the road you ultimately travel. I know it is difficult and pain saps the will so easily but the rewards are real. Believe that and you can progress. Whatever gains you make will serve you in this journey of life that we all take part in.
Cirrhosis Stage 4- My journey 
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